There is not much new to report with Sam, except that the CVVH machine was working great with the heparin. And then it had a major malfunction completely unrelated to Sam, and they are still on the search for a new one. Hopefully they can get one tonight, but they're not overly worried as he did already have the hemodialysis treatment earlier today. (**As I was writing this, they found a new one and are waiting for it to be cleared for use.) This is certainly not how we envisioned ringing in the new year, and in all likelihood we would have fallen asleep before midnight anyway, party animals that we are. We are definitely hoping that things change for the better with the new year that is just hours away.
I'm actually writing because a friend of mine who has been following Sam's story and praying for him told me about another little boy who suffered a traumatic brain injury. His name is Aaron and he is 5 years old. He is a beautiful little boy with an incredible smile just from the few pictures I've seen. He is fighting the same fight as Sam, along with some different complications. Please include Aaron, and his parents Bridget and Chris in your prayers. Although we do not know them personally, we know their pain very intimately. Thank you for including him when you lift up Sam!
If you would like to follow his story, the address is: https://www.facebook.com/PrayingforAaron/
Thursday, December 31, 2015
12/31 - On the seventh day of Christmas my true love gave to me...
...more dialysis and a surgery date to replace the bone flap.
The discussion of Sam's condition during rounds seemed to take a long time this morning, but it could just be my lack of sleep from last night. Regardless, the news is pretty much the same. I spoke to several of the doctors to review different aspects of where Sam is now.
While it was good to have Sarah here last night, I did not sleep well as I mentioned before. It took forever to get to sleep, and then we had to vacate at around four when they took X-rays. I snagged another couple of hours of shuteye, but got up a little after the shift change. (It's pretty quiet overnight, but it's almost like a cocktail party when things get rolling in the morning.) The waiting room was out of coffee, so I trudged to the cafeteria. If I make it until midnight, I'll be surprised. We're still not sure who's going to be where and when today, but I'm sure that plan will divulge itself when it's time.
I hope that you are able to celebrate in some way tonight, and that after you've greeted the new year, you might raise your glasses to Sam. This kid's in the fight of his life, and he hasn't given up. Neither have we. Ever since the accident, I've had weird fragments of memories fleeting in and out of my own mind. They're not all memories of Sam either, but connect seamlessly--in my slightly (?) addled brain at least--with what's going on now. In those sporadic moments when I remember that it's New Year's Eve, and that tomorrow ushers in 2016, this clip keeps popping into my mind:
The discussion of Sam's condition during rounds seemed to take a long time this morning, but it could just be my lack of sleep from last night. Regardless, the news is pretty much the same. I spoke to several of the doctors to review different aspects of where Sam is now.
- His kidneys continue to improve, but he's still having trouble maintaining numbers with just he Lasix. After today's hemodialysis session, (which is underway and will be done around 1:12) it looks like we're going back to CVVH (intermittent), and to keep the machine from clotting, they will be using Heparin. It's a different anticoagulant that they didn't want to use initially due to risk of a brain bleed. Everyone, including neuro is on board with using it now. I am a bit nervous about using it because of some personal stories I have heard, but I have to fully trust these people who have helped Sam get to this point. They will also have to be very careful about dosage in the near future, because...
- Monday is bone flap surgery day! We can still see swelling, but the explanation we got makes a quicker replacement date clearer. According to the CT Scans, the vascular blood vessels in his brain are increasing in size. They want to slow down/stop this process (if I understood correctly) and from the neurologist's experience, replacing the bone flap sooner has been very successful in that. So our next question was how they were going to get the remaining swelling down to make that puzzle piece fit. They will insert a drain in his spine to pull fluid off. Additionally, any permanently damaged areas of brain that are infarcted will be removed. This all makes sense and all sounds really scary, and in reality is terrifying to me. However, as I mentioned before, I have to fully entrust the process to this very skilled medical staff. As today progresses, they will be contacting Plano to work on transporting the bone flap here. Although Uber is rising in popularity, they do have a medical transport team for just such a need. I'm just wondering if it's going to show up in a little Coleman cooler, or if they have something fancier than that. They still use that method for other organs, so I guess we'll have to wait and see.
- At last check, everything else seems to be on the mend, even if it's a slow process. The only new thing is a rash that comes and goes, and everyone is keeping an eye on that as to what is causing it. No one seems to be panicking about it at this point, so I won't either.
While it was good to have Sarah here last night, I did not sleep well as I mentioned before. It took forever to get to sleep, and then we had to vacate at around four when they took X-rays. I snagged another couple of hours of shuteye, but got up a little after the shift change. (It's pretty quiet overnight, but it's almost like a cocktail party when things get rolling in the morning.) The waiting room was out of coffee, so I trudged to the cafeteria. If I make it until midnight, I'll be surprised. We're still not sure who's going to be where and when today, but I'm sure that plan will divulge itself when it's time.
I hope that you are able to celebrate in some way tonight, and that after you've greeted the new year, you might raise your glasses to Sam. This kid's in the fight of his life, and he hasn't given up. Neither have we. Ever since the accident, I've had weird fragments of memories fleeting in and out of my own mind. They're not all memories of Sam either, but connect seamlessly--in my slightly (?) addled brain at least--with what's going on now. In those sporadic moments when I remember that it's New Year's Eve, and that tomorrow ushers in 2016, this clip keeps popping into my mind:
May your New Year be filled with health, hope and love, and may it be even better than last year. Thank you for your continued prayers for Sam and everyone mentioned previously in the blog. I'd like to add my very good friend, LeAnn to the list. She was my "mae" in Costa Rica three years ago, and I love her to pieces. This morning she found out that her mom is very ill. Please pray for comfort for her and her family, healing for her mom, and that LeAnn is able to have a quick and safe trip home to be with her mom during this time.
These pictures are from our New Year's Eve celebration in 2011. It has been our tradition for several years to have group Wii time. (I am still the "Thriller" dance champion, FYI.) I also make churros and chocolate. Happy New Year.
Wednesday, December 30, 2015
12/30 - evening
Because school begins again next week, we have gotten permission for Sarah to spend the night here with me. She took this picture shortly after we got here. I have to say that it's nice to have someone here with me. The every other night tag team arrangement Jim and I have has been working pretty well, but it is very good to have company. It can be pretty isolating when you're flying solo.
The two major procedures Sam went through today were successful, and they really wore him out. It is virtually impossible to get quality sleep in a hospital, especially when you have so many issues that need constant attention. They were going to give him his evening bath for which he always wakes up, but he was so peacefully asleep that they will wait until it's time to turn him and do it all at once. I'm glad that he can have some quiet time to just rest.
His fluid output is great. (I've never talked so frequently about pee in my life with this much fulfillment.) They are continuing the Lasix when he is not on dialysis, and he's doing well with that, so it looks like his kidneys are on the mend. Tomorrow, he will have a second hemodialysis treatment. After tomorrow, he will probably continue those treatments, but with less frequency as they evaluate how much more fluid needs to come off and how his creatinine levels are.
Not much else has changed since I wrote earlier this afternoon, but I did want to check in with you before we hit the sack. It was a good day with lots of baby steps. We are constantly in awe of the support and love you are showering on us, and the amount of prayer that you guys are generating is beyond massive. The blog has been viewed close to 111,000 times (due partially to the refresh button) in just about every state, and in 12 other countries. We cannot express enough our gratitude. Thank you for continuing to pray for Sam and for everyone else who has been mentioned. Tonight, I am requesting prayers for his continued progress and healing. I'm also asking for prayers of comfort and peace for several friends and family members who are going through significant trials of their own. I'm not being super specific out of respect for their privacy. Thank you for that and for all that you have done.
Because we are thankful for all of you, here is a glimpse of our Thanksgiving meal this year.
12/30 - On the sixth day of Christmas my true love gave to me...
...an NJ tube and a round of hemodialysis. Jim was on the overnight shift, and he gave me the morning update earlier. We've been pretty much doing the every other day thing. Ever since the hospital transfer, that is what seems to work best, although that might change when school and other routine things resume again next week. When we're in opposite places, we are continually communicating with each other. There is always news to share, and it helps us keep everything that is going on straight in our own minds. We don't get a ton of time together, but as things continue to change, we do plan on remedying that.
Back to Sam...there have been lots of good things happening overnight. According to Jim:
Back to Sam...there have been lots of good things happening overnight. According to Jim:
- he's been pulling off plenty of fluids on his own, and they are confident that his kidneys will completely heal themselves.
- Until that point, they don't want his numbers to get too high. (Creatinine, I believe.) Because of that, they will do 2 rounds of hemodialysis, one today and one tomorrow.
- The NJ tube is for feeding. He has some pancreatitis, so they're bypassing it to give it some rest. I'm venturing a guess that pancreas was just jealous of all of the attention the other organs were getting, so it decided to get in on the action. At last check, he was being taken to radiology so that they could place it correctly.
- His lung X-ray looks better, and his other numbers (BP, temp) were good through the night.
Now for the "biggie" as Jim called it...It looks like he will be getting his bone flap--the portion of skull removed during the original surgery--sometime next week! There is still some swelling, but according to what Jim was told, they can help relax the tissue and put in a drain to aid the healing process. This is exciting and scary, but so much of this journey has been exactly that. We continue to thrive on the positives, and weather the challenges.
One other piece of good news came while they were suctioning him this morning. He moved his left arm. We have not seen that since right after his surgery, and we are hoping this is a very good sign of things to come.
Please keep those prayers going--not that you need that request. You are amazing with the relentless prayer! We could not do this without you, and we are grateful for your support. Today's specific prayers include:
- a successful and uneventful placment of the NJ tube AND hemodialysis session today.
- continued baby steps forward in recovery.
- comfort and peace for Jimmy's mom, and his wife, Stacie as they mourn his passing.
- comfort for little Kylā as she goes through treatment here.
- a friend of mine who, with several others, escaped a house fire unharmed, and for peace during this time of putting the pieces back together.
Today's picture is from happier, more carefree times, as we feel we are headed in that direction, at least at this moment. It was taken at Seaworld, I believe in 2007.
Tuesday, December 29, 2015
12/29 - On the 5th day of Christmas my true love gave to me...
Well, actually, he re-gifted me a continuous (CVVH) dialysis machine. While that is a little disheartening, and I might have looked like this ---------->
for a bit after hearing that, there is some good news with this turn of events. When they took Sam off last night, they were trying to see if his kidneys could pull off the remaining fluid he has retained on their own. While they were unable to do that, they are functioning much better. There's just still too much fluid in there for them to handle on their own. We really don't want to overwork them because of the damage they've already sustained, and after getting over the initial disappointment of seeing its return, we thought it was the best thing for him.
And then, after several hours with CVVH...the machine started getting blocked with clots again. (Please refer to above face.) They have tried every intervention to prevent that from happening that won't exacerbate the brain injury. So, it looks like we're going to stop the CVVH and try the Lasix intervention they tried last night. His kidneys are improved over last night's function, so we're hopeful that this time it works better. It looks like he has about 8 liters more of fluid to pull off.
This morning, Sam also got a new trach. I tend to leave the room when they do invasive things. They were done when I got back, and things were pretty calm for awhile. A few hours later, respiratory returned to replace that trach with a larger one. There has been a lot of discussion about the type of cannula in the trach, and so once again, I left the room. When I returned, the nurse said everything went smoothly, so that much is good. This new trach only needs to be changed once a month as opposed to once a week, so in the long run, this will be better.
As for other things going on, not much is happening that is new. They're still keeping an eye on the fever, and he's on antibiotics to control any infection he has. The lung X-ray is looking clearer today, so that's good news. His blood pressure seems to be holding as well, and I really don't have much to add about the liver since last night.
This has been a little bit of a rough day for me to watch all of these interventions, and to see something else not work the way they were hoping. I am looking forward to a time when all of his systems can be stabilized so that we can see what's going on with neuro. Until then, I keep working on what in our house we affectionately call the "patience muscle."
Prayer requests for the day are:
- that we can find a treatment for his kidneys and for fluid removal that work for the duration of this condition
- that any infection he may have is under control, and that his fever can also be controlled.
- for all of his caregivers. They are doing an incredible job, and Sam's really making them work extra hard on everything he's got going on.
Thank you.
I know he's been "asleep" for about 17 days now. However, every time he seems to be able rest, someone new comes in and moves him around. The picture of the day is of Sam a long time ago when he actually was able to just fall asleep without even trying. Love you guys!
Monday, December 28, 2015
12/28 - On the third and fourth days of Christmas, my true love gave to me...
3rd - a day of rest, and 4th - more baby steps toward recovery.
I know that you all have been waiting for the next blog entry as I watch the number of page views climb. After this post, I'm guessing we will surpass 100,000. I cannot even wrap my brain around that number, but please know that we draw so much energy knowing that you are all watching Sam's progress as closely as we are. Someone mentioned to me that the blog was like crack, and they found themselves obsessively checking for updates. Please check updates responsibly--no driving and blog-checking!!! I know you'll understand the delay was because I needed to mentally check out for a while and get some rest. And yesterday, I did just that. I got home, ate, downed some NyQuil and did not move for about 10 hours. It was great. Thanks for waiting patiently. (Or for waiting impatiently and not telling me about it.) Although the cold is not all the way gone, I feel worlds better than I did yesterday.
As for today, baby step day, I wasn't here for most of it, but I did get updates from Jim. Nothing huge happened, but there have been little improvements and other small challenges that occurred. The big concern--Sam's kidneys--seems to be improving with the dialysis. They started off more aggressively to get a lot of fluid off of him (which they did), and now they're backing off a little bit so they can see how he does. He is definitely less Baymax-y, and he's really starting to look like himelf. When the machine pulls his fluids to clean them, sometimes it pulls clots. We have been assured repeatedly that this is normal. The problem is that with Sam being a "big" kid and the level of fluids being pulled, the clots would stop the machine and they'd have to change the filter. They have made some adjustments, and with less volume being pulled, they think this will occur less frequently. Additionally, his normal output has increased, which indicates the kidneys are still functioning, even if they're not at 100% yet. They weighed him today, and he went from 90.2kg when he came in to 81.1kg now. That's a lot, most of which we presume is fluid. (Feel free to do the metric conversions on your own.) This is a good thing.
***Right before I hit "publish", I got some excellent news. They are stopping the dialysis and letting his kidneys try to finish the job with Lasix because they are at a reasonably normal level of function! If that doesn't work, they will try hemodialysis (intermittent,) and if not, we can go back to the continuous. I'll keep you posted!
They're still not sure what's going on with the lungs. There is not a ton of improvement if any, so they're not sure if it's fluid (not as likely now) an infection, or perhaps some damage from the accident or even some meds he received. He is on an antibiotic, and they will continue to stay on top of this until they find the culprit. For right now, his lungs are functioning ok, although the respirator is doing the bulk of the work.
Other issues included his liver, his arterial line and his trach. The liver is functioning fine, but there are some numbers they are watching to make sure everything is ok. They finally got him a new arterial line after the 3rd try. The boy clots like his dad, which we would have had no way of knowing until this happened. They will be replacing his trach tomorrow (standard procedure) and possibly looking into removing the C-collar barring any ligament damage. They'll be doing an MRI to evaluate that. Also, they did remove every other staple today from the initial surgery, and may be removing the rest tomorrow. More and more, he looks like our Sam.
He has still been opening his eyes occasionally. Most of the time he does that when they tick him off--suctioning, bathing, moving him. Once the kidneys and other systems are in a better place, they will start trying to get him to respond to stimuli. We are very anxious for that to start, and we continue to work on our patience. We know these guys know what they're doing, and we're going to let them do their job, at which they are consummate professionals.
You may be wondering how others I'd requested prayer for are doing. I was in touch with Donna, Kyle's mother. He is doing better each day as well, and will hopefully be moved to rehab at week's end. She did share with me the very sad news that Jimmy from Oklahoma who was in the room next to Sam at the previous hospital passed away this morning. My heart is hurting for his wife, Stacie, and his mom. I would ask that you keep them in your prayers as well.
Thank you, #TeamSam for all of your prayers, kind thoughts, and offers of help. We carry on in hope together, and our prayer for you as we head into the new year, is that God's peace and love surround you always.
I know that you all have been waiting for the next blog entry as I watch the number of page views climb. After this post, I'm guessing we will surpass 100,000. I cannot even wrap my brain around that number, but please know that we draw so much energy knowing that you are all watching Sam's progress as closely as we are. Someone mentioned to me that the blog was like crack, and they found themselves obsessively checking for updates. Please check updates responsibly--no driving and blog-checking!!! I know you'll understand the delay was because I needed to mentally check out for a while and get some rest. And yesterday, I did just that. I got home, ate, downed some NyQuil and did not move for about 10 hours. It was great. Thanks for waiting patiently. (Or for waiting impatiently and not telling me about it.) Although the cold is not all the way gone, I feel worlds better than I did yesterday.
As for today, baby step day, I wasn't here for most of it, but I did get updates from Jim. Nothing huge happened, but there have been little improvements and other small challenges that occurred. The big concern--Sam's kidneys--seems to be improving with the dialysis. They started off more aggressively to get a lot of fluid off of him (which they did), and now they're backing off a little bit so they can see how he does. He is definitely less Baymax-y, and he's really starting to look like himelf. When the machine pulls his fluids to clean them, sometimes it pulls clots. We have been assured repeatedly that this is normal. The problem is that with Sam being a "big" kid and the level of fluids being pulled, the clots would stop the machine and they'd have to change the filter. They have made some adjustments, and with less volume being pulled, they think this will occur less frequently. Additionally, his normal output has increased, which indicates the kidneys are still functioning, even if they're not at 100% yet. They weighed him today, and he went from 90.2kg when he came in to 81.1kg now. That's a lot, most of which we presume is fluid. (Feel free to do the metric conversions on your own.) This is a good thing.
***Right before I hit "publish", I got some excellent news. They are stopping the dialysis and letting his kidneys try to finish the job with Lasix because they are at a reasonably normal level of function! If that doesn't work, they will try hemodialysis (intermittent,) and if not, we can go back to the continuous. I'll keep you posted!
They're still not sure what's going on with the lungs. There is not a ton of improvement if any, so they're not sure if it's fluid (not as likely now) an infection, or perhaps some damage from the accident or even some meds he received. He is on an antibiotic, and they will continue to stay on top of this until they find the culprit. For right now, his lungs are functioning ok, although the respirator is doing the bulk of the work.
Other issues included his liver, his arterial line and his trach. The liver is functioning fine, but there are some numbers they are watching to make sure everything is ok. They finally got him a new arterial line after the 3rd try. The boy clots like his dad, which we would have had no way of knowing until this happened. They will be replacing his trach tomorrow (standard procedure) and possibly looking into removing the C-collar barring any ligament damage. They'll be doing an MRI to evaluate that. Also, they did remove every other staple today from the initial surgery, and may be removing the rest tomorrow. More and more, he looks like our Sam.
He has still been opening his eyes occasionally. Most of the time he does that when they tick him off--suctioning, bathing, moving him. Once the kidneys and other systems are in a better place, they will start trying to get him to respond to stimuli. We are very anxious for that to start, and we continue to work on our patience. We know these guys know what they're doing, and we're going to let them do their job, at which they are consummate professionals.
You may be wondering how others I'd requested prayer for are doing. I was in touch with Donna, Kyle's mother. He is doing better each day as well, and will hopefully be moved to rehab at week's end. She did share with me the very sad news that Jimmy from Oklahoma who was in the room next to Sam at the previous hospital passed away this morning. My heart is hurting for his wife, Stacie, and his mom. I would ask that you keep them in your prayers as well.
Thank you, #TeamSam for all of your prayers, kind thoughts, and offers of help. We carry on in hope together, and our prayer for you as we head into the new year, is that God's peace and love surround you always.
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| School Picture this year |
Sunday, December 27, 2015
12/27 - early afternoon
There is always so much activity here just for Sam. He is getting the most incredible care and attention, which I know he'd hate. I love that they do the majority of the work in Sam's room and don't have to move him around excessively. This morning's adventures have included:
I felt all bonafide and whatnot. I appreciated being included, and I really didn't feel excessively stupid, considering we are just now moving into day 15 of this quest to get our boy back.
One of the most impressive parts of this establishment is that even when there is 'bad' news, there is always a plan, and there is never an attitude of giving up or hand-wringing. It's always, "Here's the plan. If it doesn't work, here's the new plan." The nurse practitioner is already contacting rehab to secure him a bed. REHAB. Once all of the kidney and lung stuff (I'll explain shortly) is resolved, we're talking about rehab. All of that hope we held on to for dear life last week is now shared by the staff here. I thanked her for that. It takes some of my stress away, although I just seem to swap one stress for a new one. I feel it's important to have variety in one's life.
If you've been reading, you already know about the kidney issues. Something else they're monitoring is that his lungs are progressively less clear with each X-ray. Right now they are trying to determine if it is a new infection, or if it's just fluid, which should be drawn off with dialysis. Whatever it turns out to be, they are on top of it, and (naturally) have a plan.
Thank you for your neverending prayers and support. We are able to continue this fight because of all of you.
Because this picture always makes me laugh, and I think we all could use a good laugh right about now...
- multiple X-rays
- visit from PT, Trauma Nurse Practitioner, respiratory
- an attempt to replace his arterial line since they detected an infection in the old one ("attempt" because he was still too puffy to get in, and they didn't want to use him as a pincushion.)
- Lowering of meds to control bp (that seems to be stabilizing as more fluid comes off)
- Lowering of meds for sedation (time to wake up)
I also got to listen in (and participate) in rounds. Which is great, because since I now have a cold, I was already dressed for the part:
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| No, I'm not a doctor, but I did stay at a Children's Hospital last night. |
One of the most impressive parts of this establishment is that even when there is 'bad' news, there is always a plan, and there is never an attitude of giving up or hand-wringing. It's always, "Here's the plan. If it doesn't work, here's the new plan." The nurse practitioner is already contacting rehab to secure him a bed. REHAB. Once all of the kidney and lung stuff (I'll explain shortly) is resolved, we're talking about rehab. All of that hope we held on to for dear life last week is now shared by the staff here. I thanked her for that. It takes some of my stress away, although I just seem to swap one stress for a new one. I feel it's important to have variety in one's life.
If you've been reading, you already know about the kidney issues. Something else they're monitoring is that his lungs are progressively less clear with each X-ray. Right now they are trying to determine if it is a new infection, or if it's just fluid, which should be drawn off with dialysis. Whatever it turns out to be, they are on top of it, and (naturally) have a plan.
Thank you for your neverending prayers and support. We are able to continue this fight because of all of you.
Because this picture always makes me laugh, and I think we all could use a good laugh right about now...
Saturday, December 26, 2015
12/26 - On the second day of Christmas, my true love gave to me...
A dialysis machine! We have been at Children's in Dallas for almost a full day, and we are duly impressed. There have been so many people in and out of Sam's room, each with their own responsibilities, that it's almost like watching a flawless stage performance. We're still coping with the longer distance from home, including, but not limited to finding the train and dodging potential tornados. In reality, the distance is really the only downside to being here. The care is phenomenal, and we know that Sam has the best opportunity of recovery here.
First, the dialysis seems to be working, and he's beginning to have more output on his own. They are pulling off about 3 liters of fluid per hour (if I remembered that right) and he is already looking a little less puffy in some areas. We're still hoping this resolves some of the other problems that have been plaguing him, like blood pressure. We have already met people from OT, PT, respiratory, nutrition, maxillofacial, ortho, and neuro, not to mention all of the nurses that are here. Sam has his own nurse in the room for the majority of the shift, and others come in to help from time to time. The whole room is essentially a little emergency room, and so much of what he needs can happen right there. There is also a recliner and a small couch that opens up to a full bed. We're not sure that Jim and I will have a lot of nights together here, but it's nice to know that one or both of us will not be pretzel-shaped when we get up in the morning. The only other thing that is a little sticking point is the rule about visitors. In order to stay over night, you need to be over 18. Sarah's not really happy about that, but she'll get over it.
I had a fantastic talk with the doctor who was here when we were admitted last night. She had come in to give him a basic exam and spent more than 20 minutes discussing with me a lot of different things. We talked about some of the issues Sam is having. She agreed that this kidney issue was probably the main cause of his blood pressure problems. She said very plainly that Sam would have deficits, and we'd just have to wait to see what those were. While that is hard to think about, the conversation kept moving in a forward direction. She was telling me what sort of things WOULD happen when Sam came out of this, what WOULD happen when he went to rehab. There was no hopelessness or saying "We've done all we can do." There was just straight talk about what was to come. It was so encouraging to know that no matter which version of Sam comes out of this, everyone is on board with helping him be his best, and recovering all of the things he may have lost. In fact, rehab will be starting shortly. I can't remember if she said 2 days of sometime next week--I'm a little fried--but in either case, that's amazing. They feel that the earlier they start, the better off the patient is, and I couldn't agree more. We are in the absolute right place for this stage of the journey, and we're excited to see where it will lead us.
Please continue to be in prayer for Sam and others previously mentioned. Also, there were some tornadoes that destroyed several nearby areas, if you would please add them to the ever growing list. Thanks!
First, the dialysis seems to be working, and he's beginning to have more output on his own. They are pulling off about 3 liters of fluid per hour (if I remembered that right) and he is already looking a little less puffy in some areas. We're still hoping this resolves some of the other problems that have been plaguing him, like blood pressure. We have already met people from OT, PT, respiratory, nutrition, maxillofacial, ortho, and neuro, not to mention all of the nurses that are here. Sam has his own nurse in the room for the majority of the shift, and others come in to help from time to time. The whole room is essentially a little emergency room, and so much of what he needs can happen right there. There is also a recliner and a small couch that opens up to a full bed. We're not sure that Jim and I will have a lot of nights together here, but it's nice to know that one or both of us will not be pretzel-shaped when we get up in the morning. The only other thing that is a little sticking point is the rule about visitors. In order to stay over night, you need to be over 18. Sarah's not really happy about that, but she'll get over it.
I had a fantastic talk with the doctor who was here when we were admitted last night. She had come in to give him a basic exam and spent more than 20 minutes discussing with me a lot of different things. We talked about some of the issues Sam is having. She agreed that this kidney issue was probably the main cause of his blood pressure problems. She said very plainly that Sam would have deficits, and we'd just have to wait to see what those were. While that is hard to think about, the conversation kept moving in a forward direction. She was telling me what sort of things WOULD happen when Sam came out of this, what WOULD happen when he went to rehab. There was no hopelessness or saying "We've done all we can do." There was just straight talk about what was to come. It was so encouraging to know that no matter which version of Sam comes out of this, everyone is on board with helping him be his best, and recovering all of the things he may have lost. In fact, rehab will be starting shortly. I can't remember if she said 2 days of sometime next week--I'm a little fried--but in either case, that's amazing. They feel that the earlier they start, the better off the patient is, and I couldn't agree more. We are in the absolute right place for this stage of the journey, and we're excited to see where it will lead us.
Please continue to be in prayer for Sam and others previously mentioned. Also, there were some tornadoes that destroyed several nearby areas, if you would please add them to the ever growing list. Thanks!
"Tower of Loefflers" from 3 years ago. Sam's on the top.
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12/26 - Early Morning
I apologize for the brief and hasty post last night with no further clarification. As you might imagine, we are incredibly worn out. After an absolutely joy-filled day, we went out for our "Christmas Story" dinner. They were slammed. I had no idea that Chinese restaurants were THE place to eat on Christmas. No sooner had they started bringing out the food, than Jim's phone rang. It was the hospital. He walked out to the entry way so he could hear better. All I could hear was..."Nephrologist...creatinine...transfer." We rushed to get all of the food packed up, paid the bill, and left. My mom headed home, and we flew around the house pulling together what we might need for at least one overnight stay.
When we got there, the Dr. was on the phone with the Dr. from the new hospital. When she was finished, she filled us in on everything that had transpired. One of our nurses noticed that Sam had been having low urine output ever since the trach procedure. Sometimes after surgery, patients don't have as much fluid output, so they thought it might be that, but started keeping a closer eye on it. As soon as it was clear it wouldn't get better, they did a CT scan on his belly to check organs, (that was clear) and they ran a bunch of blood tests. His creatinine levels were through the roof, indicating kidney failure at some level. This could explain a whole slew of his problems. He has been extremely puffy (we had attributed that to all the meds he's on), and his blood pressure and heart rate are really high (we had thought it was brain related, and they may have just been compensating for kidney issues). At Medical Center of Plano, once they got those results, they contacted the nephrologist. He was unable to administer any treatment because there is a significant difference between adult kidney treatment and pediatric kidney treatment. There is no pediatric nephrologist at the hospital. While Sam is adult-sized, they did not want to risk it with his age, so the decision was made to transfer him to Children's in Dallas.
It took a bit for the team to get to Plano, but they spent an eternity disconnecting/reconnecting him for transport, double checking lines, adjusting sedation, etc. The nurses and trauma doc with whom we've worked since this started were kind of emotional, and asked us to please keep them updated on how Sam was doing. They had invested so much time and emotion and love in him, and now they weren't going to get to see his recovery. That was almost the hardest part of the whole thing of leaving this place. There was a certain level of comfort, knowing the people and the place, and also bonding with the families of other patients who were in the same state of tenuous state of raw emotional vulnerability. We were all traveling the same road more or less and became an odd sort of family, swapping stories, and praying for and supporting each other. It made the rush-rush nature of our departure even harder, and we will certainly continue to hold all of these people in prayer.
They finally loaded Sam up, I road in the ambulance with him, and Jim followed in the car. As we came into Dallas, it was lit up more so than usual to celebrate the Christmas season, and when we pulled into the hospital, if we hadn't been here for such a dire reason, it would have been even more spectacular. I'm not sure how many floors there are here, but this place is insanely huge, well manicured, and close to the rest of the big, fancy buildings of downtown Dallas. (We are not a fancy people, but we do love the city atmosphere.) They got him to his room, and a massive team of people started reconnecting him and assessing him. I gave some details about what had happened to this point to someone, and then we had to take care of some paperwork in the waiting area. As we didn't get to partake in Chinese Christmas, while we waited, we feasted on Chili Cheese Fritos and Peanut M n M's. Not exactly what I'd usually prepare, but it was a lot less clean up. After waiting for a while, we decided to go back and check on Sam's status.
First off, because he came from another hospital, it is standard procedure that if you get near him, you must wear a mask, gown and gloves. He is in a much bigger room, and even has his own nurse. Additionally, the charge nurse was in last night helping with all of the connections. His room had both a pull out sofa and a reclining lounge, which will make staying here so much easier. We have always heard wonderful things about Children's--it doesn't matter which one. In fact, Sam's already visited a different one once. (Please recall Disney burn incident, 2001.) From the moment we were told we were coming here, we were told that Sam would be well cared for. So far, that has most certainly been the case.
So, where do we stand healthwise? When we got here, they explained that in order to try to get his kidneys in balance, they would push a lot of Lasix. They wanted to see if his kidneys could recover on their own without more invasive procedures. At 5am, we were woken up by the doctor. It did not work, and Sam would need CVVH dialysis. This is a temporary form of dialysis that works on a continuous basis via catheter placed intravenously. It is different than standard dialysis because in that, fluid is removed every so often, which is harder on other systems and processes, including blood pressure. We are hoping that this is one treatment that Sam doesn't reject, because it may be the key that resolves even more of his problems. Right now, we have been booted from the room so they can complete the procedure, and hopefully we can get back in to see him soon.
We are still very positive about his recovery, and we're taking this as just another setback that has ultimately put Sam and us in a very good position. We loved the first hospital and the people, and they did a tremendous job keeping this boy alive. We also know that he will receive remarkable care here. Thank you for your patience after yesterday's extreme highs and lows, for sticking with this uber-long post, and for continuing to offer up prayers on Sam's and all of our behalf. I'm leaving you with the new early morning view.
When we got there, the Dr. was on the phone with the Dr. from the new hospital. When she was finished, she filled us in on everything that had transpired. One of our nurses noticed that Sam had been having low urine output ever since the trach procedure. Sometimes after surgery, patients don't have as much fluid output, so they thought it might be that, but started keeping a closer eye on it. As soon as it was clear it wouldn't get better, they did a CT scan on his belly to check organs, (that was clear) and they ran a bunch of blood tests. His creatinine levels were through the roof, indicating kidney failure at some level. This could explain a whole slew of his problems. He has been extremely puffy (we had attributed that to all the meds he's on), and his blood pressure and heart rate are really high (we had thought it was brain related, and they may have just been compensating for kidney issues). At Medical Center of Plano, once they got those results, they contacted the nephrologist. He was unable to administer any treatment because there is a significant difference between adult kidney treatment and pediatric kidney treatment. There is no pediatric nephrologist at the hospital. While Sam is adult-sized, they did not want to risk it with his age, so the decision was made to transfer him to Children's in Dallas.
It took a bit for the team to get to Plano, but they spent an eternity disconnecting/reconnecting him for transport, double checking lines, adjusting sedation, etc. The nurses and trauma doc with whom we've worked since this started were kind of emotional, and asked us to please keep them updated on how Sam was doing. They had invested so much time and emotion and love in him, and now they weren't going to get to see his recovery. That was almost the hardest part of the whole thing of leaving this place. There was a certain level of comfort, knowing the people and the place, and also bonding with the families of other patients who were in the same state of tenuous state of raw emotional vulnerability. We were all traveling the same road more or less and became an odd sort of family, swapping stories, and praying for and supporting each other. It made the rush-rush nature of our departure even harder, and we will certainly continue to hold all of these people in prayer.
They finally loaded Sam up, I road in the ambulance with him, and Jim followed in the car. As we came into Dallas, it was lit up more so than usual to celebrate the Christmas season, and when we pulled into the hospital, if we hadn't been here for such a dire reason, it would have been even more spectacular. I'm not sure how many floors there are here, but this place is insanely huge, well manicured, and close to the rest of the big, fancy buildings of downtown Dallas. (We are not a fancy people, but we do love the city atmosphere.) They got him to his room, and a massive team of people started reconnecting him and assessing him. I gave some details about what had happened to this point to someone, and then we had to take care of some paperwork in the waiting area. As we didn't get to partake in Chinese Christmas, while we waited, we feasted on Chili Cheese Fritos and Peanut M n M's. Not exactly what I'd usually prepare, but it was a lot less clean up. After waiting for a while, we decided to go back and check on Sam's status.
First off, because he came from another hospital, it is standard procedure that if you get near him, you must wear a mask, gown and gloves. He is in a much bigger room, and even has his own nurse. Additionally, the charge nurse was in last night helping with all of the connections. His room had both a pull out sofa and a reclining lounge, which will make staying here so much easier. We have always heard wonderful things about Children's--it doesn't matter which one. In fact, Sam's already visited a different one once. (Please recall Disney burn incident, 2001.) From the moment we were told we were coming here, we were told that Sam would be well cared for. So far, that has most certainly been the case.
So, where do we stand healthwise? When we got here, they explained that in order to try to get his kidneys in balance, they would push a lot of Lasix. They wanted to see if his kidneys could recover on their own without more invasive procedures. At 5am, we were woken up by the doctor. It did not work, and Sam would need CVVH dialysis. This is a temporary form of dialysis that works on a continuous basis via catheter placed intravenously. It is different than standard dialysis because in that, fluid is removed every so often, which is harder on other systems and processes, including blood pressure. We are hoping that this is one treatment that Sam doesn't reject, because it may be the key that resolves even more of his problems. Right now, we have been booted from the room so they can complete the procedure, and hopefully we can get back in to see him soon.
We are still very positive about his recovery, and we're taking this as just another setback that has ultimately put Sam and us in a very good position. We loved the first hospital and the people, and they did a tremendous job keeping this boy alive. We also know that he will receive remarkable care here. Thank you for your patience after yesterday's extreme highs and lows, for sticking with this uber-long post, and for continuing to offer up prayers on Sam's and all of our behalf. I'm leaving you with the new early morning view.
Friday, December 25, 2015
12/25 - night
Prayers, please. They are transferring Sam to Children's, Dallas for a kidney issue they cannot treat here. I'll post more when I know what's going on. Thank you.
12/25 - late afternoon
This certainly has been an incredible day. After this morning's huge news, the day has been a little anticlimactic, but exceptional nonetheless. Sam was never as alert as he was earlier in the morning, but he did do a couple of hand squeezes, and I did get to see his eyes. His gaze was so intense, that the only way I can describe it is that is was like he was looking into my soul. The nurse also touched his shoulder and he turned toward that. Although they are still not calling these purposeful movements, we are choosing to believe that at the very least, those will be showing up soon. After all, we were also told that he could be knocked out for several days or even weeks more. This child has always been ahead of schedule. Why should that change now?
As for being anticlimactic, we are well aware that every step of this journey will have moments of excitement tempered with plateaus and maybe even steps backwards. We don't view that he wasn't as active the rest of the day as negative. He wasn't even supposed to be awake yet. This is HUGE, no matter how you stack it. There are still blood pressure concerns, and the nurse practitioner said she was concerned, because the area of swelling was "hard" indicating high ICP. He is scheduled for another CT scan tomorrow morning, and it is our hope that the swelling will show signs of receding, and that his brain stem is still in good shape. Regardless of what may come, we can very clearly feel God's hand at work in all of this. We appreciate your continued prayers as this epic battle continues.
Specific prayer concerns:
As for being anticlimactic, we are well aware that every step of this journey will have moments of excitement tempered with plateaus and maybe even steps backwards. We don't view that he wasn't as active the rest of the day as negative. He wasn't even supposed to be awake yet. This is HUGE, no matter how you stack it. There are still blood pressure concerns, and the nurse practitioner said she was concerned, because the area of swelling was "hard" indicating high ICP. He is scheduled for another CT scan tomorrow morning, and it is our hope that the swelling will show signs of receding, and that his brain stem is still in good shape. Regardless of what may come, we can very clearly feel God's hand at work in all of this. We appreciate your continued prayers as this epic battle continues.
Specific prayer concerns:
- that the swelling and pressure in the brain are reduced, and that there is no damage to the brain stem
- that Sam continues to make small improvements and shows us purposeful movement as he continues to get the pentobarb out of his system.
- that his blood pressure and heart rate can stay in an acceptable range
- for Kyle and Lily's continued recovery, and for a couple of additional people. One is the man in the corner room next to Sam. I don't know his name, but he has been having setbacks along with his baby steps toward recovery. His family has been here for about as long as we have, and they are from Oklahoma. Also for the woman that was brought in yesterday and is in the room on the other side of Sam. I believe she was hit by a car, but she is in incredibly bad shape. Her family has also been here, including some pre-teenaged kids. Also, continued prayers for Albert Harris and his family. We have not seen them since the night I'd initially written about them, and we pray that he is doing well in recovery from heart surgery.
12/25 early afternoon - On the first day of Christmas, my true love gave to me...
I went home briefly and wouldn't you know it? I got a text from Sarah saying there had been some response. After not hearing from either her or Jim, I called. While it was brief, and some of the medical staff does not know if it was purposeful movement, here is what happened:
(Sarah saw it first. She is now dictating to me.) So Nana and I went down there, and the nurse was talking to him trying to get him to respond, which he did. He was blinking and tilting his head. He was particularly angry when she pinched him in the shoulder. (Insert Sarah chuckle.) The nurse tried to get me to talk to him, so I played Rutter Gloria, and he looked at me. Nana left and Dad came.
(Now Jim's taking over.)
Several times, he squeezed my hand. (He's not sure if he was responding to commands or not.) It was clear both of his eyes were open, and he was looking at me. Several times he would open his eyes or blink when I asked him.
(Back to Ann)
Sarah & Jim read him the email from John Rutter a couple of times, and Sarah said she thought she saw him smile.
Now, we're letting him rest a little before we agitate him again. I so wish that I had been here, but there is just no room for any negative feelings for me right now. (I can't remember the last time I physically leapt for joy.)
We will continue to post as the day unfolds. A very Merry Christmas to all of you! Stay tuned!
(Sarah saw it first. She is now dictating to me.) So Nana and I went down there, and the nurse was talking to him trying to get him to respond, which he did. He was blinking and tilting his head. He was particularly angry when she pinched him in the shoulder. (Insert Sarah chuckle.) The nurse tried to get me to talk to him, so I played Rutter Gloria, and he looked at me. Nana left and Dad came.
(Now Jim's taking over.)
Several times, he squeezed my hand. (He's not sure if he was responding to commands or not.) It was clear both of his eyes were open, and he was looking at me. Several times he would open his eyes or blink when I asked him.
(Back to Ann)
Sarah & Jim read him the email from John Rutter a couple of times, and Sarah said she thought she saw him smile.
Now, we're letting him rest a little before we agitate him again. I so wish that I had been here, but there is just no room for any negative feelings for me right now. (I can't remember the last time I physically leapt for joy.)
We will continue to post as the day unfolds. A very Merry Christmas to all of you! Stay tuned!
Thursday, December 24, 2015
Christmas eve - Nighttime
I write this as I sit next to Sam, as the rest of my family is at Christmas Eve worship, or in Aaron's case, finishing up working a double after spending the night here with very little sleep. I am still getting to go to church online. Thanks, Preston Meadow Lutheran, for your online worship tonight!
There's not much to report on right now. Sam has still been having some trouble with blood pressure, but they continue to try different meds to bring that down. He was also overblowing the ventilator, which is good, but not good. He's breathing a little easier now after some adjustment. For every issue and intervention, he has fought against it. Because of Sam's complete and utter disdain for any change to his routine, this should be no surprise to anyone who knows him. A small bit of good news is that his lungs are getting clearer from the original infection. Suctioning will be a regular thing, though. Due to the ventilator, he will continue to have buildup, even if there's no infection. (The learning curve on this situation has been insane. I know more than I ever wanted to know about brains, respirators and a myriad of meds.) Right now however, it looks like the issues he initially had with pneumonia are clearing up. In any case, we are hoping for a much calmer night than last night.
As you all celebrate this season however you choose to do so, please know we are thankful for you, and wish you health and happiness as we head into the new year. I wasn't sure what picture to choose, so I'm including several of my faves, one of which was requested by my brother. Have a very Merry Christmas.
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| Singing at Dickens in Plano - this year |
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| After the CCGD Christmas Concert at the Meyerson this year |
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| Last Christmas with his favorite gift - retro gaming system |
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| Squad up - last year |
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| 2013 |
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| Our first Christmas in TX - 2008 |
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| Last group photo with Santa - 2009 |
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| By special request - no clue what year |
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| Still no clue what year |
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| Christmas - 2000? I think? |
12/24 - Mid afternoon
Many of you have been waiting for this, so we won't make you wait any longer. The surgery was a success, and Sam is the proud new owner of a tracheostomy and feeding tube. Additionally, his blood pressure seems to have come down, although some of the machines are being glitchy. They're trying to get him all reattached to new stuff and detached from stuff he doesn't need anymore. Thank you so much for your messages and posts about keeping him in prayer during surgery. We are again back to the waiting game.
This whole odyssey has been filled with God moments, and I wanted to share one that happened this afternoon while we were waiting for him to come back from surgery. The nurse (Sarah) was talking to me about a patient from about a year ago. She was a teenage girl who was T-boned by a drunk driver. They had given a very poor prognosis, but her mom would not give up on her because she knew her daughter was still in there. She decorated the whole room, and she played Indian music for her that she knew and loved. Sarah was in the room at one point, and there had previously been no response from the girl. While the music was playing, she saw that her hand had formed in a mudras - one of the hand gestures used in this type of dance. At that point, Sarah knew she was in there, too.
TODAY as they were bringing Sam back to his room after surgery, that same girl had come back to visit everyone in the trauma ICU who had helped her. She was walking and talking and hugging everyone. She was the girl given very little promise of recovery. Sarah had not seen her since she left trauma, and we all knew that it was no accident that she chose today to visit. We know that Sam is in there. We just need to be patient until he wakes up. Thanks for waiting with us.
This whole odyssey has been filled with God moments, and I wanted to share one that happened this afternoon while we were waiting for him to come back from surgery. The nurse (Sarah) was talking to me about a patient from about a year ago. She was a teenage girl who was T-boned by a drunk driver. They had given a very poor prognosis, but her mom would not give up on her because she knew her daughter was still in there. She decorated the whole room, and she played Indian music for her that she knew and loved. Sarah was in the room at one point, and there had previously been no response from the girl. While the music was playing, she saw that her hand had formed in a mudras - one of the hand gestures used in this type of dance. At that point, Sarah knew she was in there, too.
TODAY as they were bringing Sam back to his room after surgery, that same girl had come back to visit everyone in the trauma ICU who had helped her. She was walking and talking and hugging everyone. She was the girl given very little promise of recovery. Sarah had not seen her since she left trauma, and we all knew that it was no accident that she chose today to visit. We know that Sam is in there. We just need to be patient until he wakes up. Thanks for waiting with us.
12/24 - late morning
If you prayed for rest for us, job well done. We did not wake up until almost 9am. Just now, we got a call from Sam's nurse that they are taking him to surgery for the tracheostomy and feeding tube now. We wanted to let you know that before we headed in, should you be in a praying place right now. Aaron said that his blood pressure stabilized during the night, and that is good.
Our hope carries us on, and we cannot help but feel like something big is about to happen. You have supported us so fiercely that it has become almost tangible to us. Throughout all of this, we know that you are all busy with your own Christmas preparations and celebrations. We are grateful to you for including us in your thoughts and prayers. It is our wish that you all may have a very Merry Christmas.
Our hope carries us on, and we cannot help but feel like something big is about to happen. You have supported us so fiercely that it has become almost tangible to us. Throughout all of this, we know that you are all busy with your own Christmas preparations and celebrations. We are grateful to you for including us in your thoughts and prayers. It is our wish that you all may have a very Merry Christmas.
This is two years old, but it's the most recent Christmas pic I have where we are all appropriately attired. Merry Christmas!
Wednesday, December 23, 2015
12/24 - super early morning edition
Just a quick post as we just got back from the hospital. We need to sleep, so Aaron has the overnight shift tonight. Not much news other than his blood pressure is being a jerk. They're giving him meds to bring it down, but since it's the only number left to watch, it's agonizingly slow. It was coming down a bit when we left, and we're hoping it continues that trend, and that the trach and feeding tube go smoothly tomorrow. Goodnight, friends. Sleep well. We will try to do the same.
12/23 - afternoon update
It appears that hopefulness breeds extreme hunger as I just devoured everything I found when I got home. This whole experience also has a tendency to cause sudden onset exhaustion, so I foresee a nap in my immediate future. We are taking care of ourselves as best possible, and each day changes how we handle our own needs.
Prior to leaving the hospital earlier, I did not receive a whole lot of outright good news, and I only received a little bit of bad, which was anticipated anyway. I will start with the not so positive. Cristin stopped by to check on Sam, although he's not officially on her patient list today. That boy has wiggled his way into everyone's hearts and minds, and people keep checking on him even though he's not officially in their charge. I asked her about what she saw on his scan from this morning. She said there was not too much change other than an area that suffered an infarction. Essentially, that tissue is dead. We do not know what functions that part of the brain controlled, and there is still possibility of recovering those functions using other areas of the brain. We knew there would be damage, but we have to wait until he comes out of the coma to see exactly what's going on. While this is not great news, it was expected. The good news from the scan is that the brain stem still has space around it, which is where their primary concern lies. There were no other changes except that the swelling is not increasing, and may very well be receding. I did not receive any official word that that is happening, but things are definitely pointing in that direction.
Now for tidbits that are an indication of good things happening. I already mentioned the area around the brain stem, and each time they check his eyes, they are react more quickly than while he was on the pentobarb. All of his other systems seem to be working fine. As for the EEG monitor, it is one more thing we don't get to obsess over anymore. They monitored him through the night, took the machine away in the morning to read it, and it never came back. That made me nervous because in my mind, they were giving up on him. As it turns out, I was completely wrong, and this is a good thing. It did not return because they saw enough registered brain activity and do not need to monitor that any further. Additionally, as he comes off meds, the skin mottling is resolving itself, even if he's still a little puffy. (Actually, he's huge, especially his arms. He's got Baymax hands, currently. For more info, search Google for Big Hero 6.) Finally, they had taken off the head wrapping to do some things, and we went in to see him. TO BE CLEAR: This is not at all from official medical personnel, but I could have sworn that the area of swelling looked smaller. I was not the only non-medical person to note this. I don't want to grasp at imaginary straws at all through any of this. (Remember Ann = realist) I do think we are finally seeing some things we've been waiting to see since this all began. Our hope is kind of getting out of control.
Looking to the future--as in tomorrow--we believe that they will be putting in a tracheostomy and feeding tube. That is somewhat unnerving, but it is also pretty standard procedure. This will get all of the tubing out of his throat and lower risk of infection. It may be unsettling for us, but in reality is a step in a positive direction. We also need to keep steady control on his temp and blood pressure. We're all over those since they're really the only numbers left we have to watch. It could still potentially be several days or longer until he wakes up, but at each check, he is showing more and more evidence that this is happening. It is almost like when after a computer is rebooted, the systems slowly come back online. We are ever so slowly watching his systems come back up. We are incredibly anxious for the moment he comes out of this, but as has become the new normal, we'll just have to wait.
As is also the new normal, we thank you for continuing this journey with us. This #TeamSam thing is getting kind of big, and we are sustained by you all traveling right alongside us. Prayer concerns for today are:
This photo was taken the night before the accident when the choir was caroling at the nursing home. Sam is in the back row, 2nd from the left.
Prior to leaving the hospital earlier, I did not receive a whole lot of outright good news, and I only received a little bit of bad, which was anticipated anyway. I will start with the not so positive. Cristin stopped by to check on Sam, although he's not officially on her patient list today. That boy has wiggled his way into everyone's hearts and minds, and people keep checking on him even though he's not officially in their charge. I asked her about what she saw on his scan from this morning. She said there was not too much change other than an area that suffered an infarction. Essentially, that tissue is dead. We do not know what functions that part of the brain controlled, and there is still possibility of recovering those functions using other areas of the brain. We knew there would be damage, but we have to wait until he comes out of the coma to see exactly what's going on. While this is not great news, it was expected. The good news from the scan is that the brain stem still has space around it, which is where their primary concern lies. There were no other changes except that the swelling is not increasing, and may very well be receding. I did not receive any official word that that is happening, but things are definitely pointing in that direction.
Now for tidbits that are an indication of good things happening. I already mentioned the area around the brain stem, and each time they check his eyes, they are react more quickly than while he was on the pentobarb. All of his other systems seem to be working fine. As for the EEG monitor, it is one more thing we don't get to obsess over anymore. They monitored him through the night, took the machine away in the morning to read it, and it never came back. That made me nervous because in my mind, they were giving up on him. As it turns out, I was completely wrong, and this is a good thing. It did not return because they saw enough registered brain activity and do not need to monitor that any further. Additionally, as he comes off meds, the skin mottling is resolving itself, even if he's still a little puffy. (Actually, he's huge, especially his arms. He's got Baymax hands, currently. For more info, search Google for Big Hero 6.) Finally, they had taken off the head wrapping to do some things, and we went in to see him. TO BE CLEAR: This is not at all from official medical personnel, but I could have sworn that the area of swelling looked smaller. I was not the only non-medical person to note this. I don't want to grasp at imaginary straws at all through any of this. (Remember Ann = realist) I do think we are finally seeing some things we've been waiting to see since this all began. Our hope is kind of getting out of control.
Looking to the future--as in tomorrow--we believe that they will be putting in a tracheostomy and feeding tube. That is somewhat unnerving, but it is also pretty standard procedure. This will get all of the tubing out of his throat and lower risk of infection. It may be unsettling for us, but in reality is a step in a positive direction. We also need to keep steady control on his temp and blood pressure. We're all over those since they're really the only numbers left we have to watch. It could still potentially be several days or longer until he wakes up, but at each check, he is showing more and more evidence that this is happening. It is almost like when after a computer is rebooted, the systems slowly come back online. We are ever so slowly watching his systems come back up. We are incredibly anxious for the moment he comes out of this, but as has become the new normal, we'll just have to wait.
As is also the new normal, we thank you for continuing this journey with us. This #TeamSam thing is getting kind of big, and we are sustained by you all traveling right alongside us. Prayer concerns for today are:
- temperature and blood pressure control
- that Sam continues to come out of the coma with as little collateral damage as possible
- for brain swelling to decrease
- for continued hope and peace for all of us as we go through this
Additionally, since this is being read by so many people in so many different parts of the world, if you live in the Moline, IL area, we have friends who are hoping to borrow a wheelchair (short term) for their son who is having a medical procedure at the beginning of the new year. If you might be able to help, please message me. Thanks so much!
This photo was taken the night before the accident when the choir was caroling at the nursing home. Sam is in the back row, 2nd from the left.
12/23 - morning quick post
I was up a little before nurse shift change, so I headed down there. We have not heard from the doctor officially about last night's scan. So many of you posted messages that you were up and praying at that time! (Even though Blogger's time stamp was a little wonky.) Thank you for that. I did get a preliminary look at the written report because one of the nurses pulled it up for me. All I want to say at this point is that there is nothing new and negative there from what she saw. There are some things I interpreted as potentially positive, but I don't want to post that until I'm sure. At the very least, there is no new bad stuff to report from the scan.
This morning, Sam's blood pressure is elevated, but they are trying to control that with medication. And once again, he's having trouble regulating his temperature. They're working on bringing that down as well.
Other than that, I've got nothing more for you. I did hear from Awesome Donna #1 about Kyle. He has a new issue that they're working on, but hopefully will be resolved soon. On the positive side, he is more responsive every day, which is great news. Keep praying, friends! We love you! I'll leave you with the picture I took on my way after meeting with the nurses this morning.
This morning, Sam's blood pressure is elevated, but they are trying to control that with medication. And once again, he's having trouble regulating his temperature. They're working on bringing that down as well.
Other than that, I've got nothing more for you. I did hear from Awesome Donna #1 about Kyle. He has a new issue that they're working on, but hopefully will be resolved soon. On the positive side, he is more responsive every day, which is great news. Keep praying, friends! We love you! I'll leave you with the picture I took on my way after meeting with the nurses this morning.
Tuesday, December 22, 2015
12/22 - late evening
Three posts in a day might be a new record. We continue to live in hope, even when we get grim news. Nothing new has happened physically with Sam, and we have received no new bad news. I did talk with the nurse a little bit ago, and she told me that he was scheduled for a CT scan. She will be trying to get him in there around 1am. We're not sure when we'll hear the findings, but we are presuming they're looking for the same things they did on Saturday: blood flow to the brain, level of swelling, and if there is any new damage or bleeding. If you happen to be up around that time, we'd appreciate a prayer for a good scan. Any improvement would be wonderful to us, as we hang on to every tiny scrap of positivity for dear life. And we hang on to those even when other people who are trained in this field don't see them the same way. I am not questioning the caregivers at all. They have given a heroic effort with this child, and they are the ones that have gotten him through to this point. We also know that the brain is so complex and amazing things can still happen. God is God and I don't think he's done yet.
A couple of updates on other people for you...Lily has started to respond slowly to stimulation, and the 16 year old next door is already up and moving around. We did meet new people tonight--another wonderful Donna, whose father had open heart surgery and is struggling with other coronary issues. It turns out she and her husband are music ministers, making the world smaller yet. She and I were talking about faith and hope, and she has already been such a tremendous support to me. Please pray for her father, Albert Harris, and for their whole family. Personally, in addition to the obvious ones, I'm saying prayers of thanksgiving for the fabulous nursing staff, particularly the two that we've had through today and into tomorrow morning. They have had multiple shifts with Sam, and today, were a part of the reason I still have hope. They have seen incredible things, especially with brain injury, and have given me no indication that it's time to give up. They have simply been--as most nurses are--amazing, and an absolute blessing through all of this. Thank you for your unfaltering support. I feel like I type this all the time, but we want you to know how grateful we are for you.
A couple of updates on other people for you...Lily has started to respond slowly to stimulation, and the 16 year old next door is already up and moving around. We did meet new people tonight--another wonderful Donna, whose father had open heart surgery and is struggling with other coronary issues. It turns out she and her husband are music ministers, making the world smaller yet. She and I were talking about faith and hope, and she has already been such a tremendous support to me. Please pray for her father, Albert Harris, and for their whole family. Personally, in addition to the obvious ones, I'm saying prayers of thanksgiving for the fabulous nursing staff, particularly the two that we've had through today and into tomorrow morning. They have had multiple shifts with Sam, and today, were a part of the reason I still have hope. They have seen incredible things, especially with brain injury, and have given me no indication that it's time to give up. They have simply been--as most nurses are--amazing, and an absolute blessing through all of this. Thank you for your unfaltering support. I feel like I type this all the time, but we want you to know how grateful we are for you.
12/22 - evening
The pentobarb is done, and the bolt is out. We are no longer relying on the ICP monitor since they're not measuring that anymore. Because of that, we do not know what the CPP is either. We have been told that it will take a long time for the pentobarb to get out of his system, but this kid has the metabolism of a hummingbird, so I'm guessing sooner rather than later.
As I said before, this is all both good and bad. The hardest part right now is the sheer terror of not knowing. The ICP monitor was becoming a serious crutch, but I miss it a little. We are hoping to have some answers soon. Please continue to pray. We would not be surviving this hell without you. Please know that you are carrying us and Sam through this time. Thank you.
As I said before, this is all both good and bad. The hardest part right now is the sheer terror of not knowing. The ICP monitor was becoming a serious crutch, but I miss it a little. We are hoping to have some answers soon. Please continue to pray. We would not be surviving this hell without you. Please know that you are carrying us and Sam through this time. Thank you.
A friend posted this today. Sam is the mad hatter in the fabulous vest.
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